Informal education and health promoting approaches in adult cancer survivors

This review looks at the available data relating to the informal education aspects and other health promoting approaches applied by adult cancer survivors to reduce the risk of cancer. The implications of such behavioral interventions on oncology practice are discussed. We also highlight areas of future research to pursue. Available data show that many cancer survivors remain engaged in risky health behaviors post-diagnosis, which are associated with an increased risk of disease's recurrence. However, over the last years patients seem to increasingly receive adequate risk-based medical care. The application of appropriate informal education approaches, such as diet, exercise, and cessation of former unhealthy habits, such as smoking and alcohol has facilitated behavioral changes in cancer survivors, thoroughly improving their well being and overall quality of life (QOL). Most of the research studies published to date have applied structured lifestyle interventions on intensive, individualized counseling sessions delivered by trained personnel or psychosocial-based mediations and reported that these approaches are largely effective in promoting the adoption of a healthier lifestyle in cancer survivors. These interventions have been reported to reduce the risk of cancer recurrence and thus to obtain an obvious positive impact on their well-being and overall QOL. However, there is still insufficient evidence to conclude and support with confidence the effectiveness of any of these behavioral interventions and therefore future interventions should be initiated to assess the long-term effects and validating outcomes of lifestyle and other psychosocial interventions.     

Enfermedad de Alzheimer y calidad de vida del cuidador informal

Background

Along with an ageing population, a higher incidence of chronic diseases leads to increasingly complex health profiles. The relationship between survival, dependence, and social and demographic trends affecting caregiving, has led to an increase in the negative consequences associated with care provision. In this context, an assessment needs to be made on the impact that caregiving has on the well-being of the caregivers. The main aim of this article is to study the factors that determine the Quality of Life (QoL) of those who provide informal care to people suffering from Alzheimer's disease (AD).

Oral health practices and beliefs among caregivers of the dependent elderly

doi: 10.1111/j.1741‐2358.2011.00553.x Oral health practices and beliefs among caregivers of the dependent elderly Background: Caregivers deal with oral health care of the dependent elderly; however, this has a low priority among them, and their education in daily oral care is deficient. Therefore, studying the oral care practices as well as their oral health beliefs is important as these affect the quality of the oral care they perform. Objective: To compare formal and informal caregivers’ oral care practices and oral health beliefs when taking care of severely dependent elderly. Material and methods: A cross‐sectional study was conducted on a convenience sample of 21 formal caregivers from a long‐term residence and 18 informal caregivers from a local primary health care domiciliary programme. Caregivers were surveyed using a questionnaire designed to elicit oral care practices and oral health beliefs. The nursing Dental Coping Beliefs Scale questionnaire was translated and validated in Chile. Results: Significant differences were observed between formal and informal caregivers’ performance of some oral health care practices. There were no significant differences between formal and informal caregivers’ oral health beliefs. Conclusions: Although there are some differences in formal and informal caregivers’ oral health care practices, we cannot state that one caregiver’s performance is better than the other, in fact, negative oral health beliefs were found in both groups.     

Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen in het ziekteproces

This paper investigates whether informal caregivers of persons who have had symptoms of dementia for less than a year, differ from informal caregivers of persons in subsequent stages of dementia. Differences will be investigated in (a) problems experienced in the provision of informal care, (b) the use of ambulatory types of professional support, and (c) the need for additional professional support. Results are based on a survey among 1494 Dutch informal caregivers. Almost all informal caregivers experience problems in caring for a person with dementia, irrespective of the stage of the illness process. Their main problems concern dealing with changes in the behaviour of the person with dementia and dreading the person's admission to a nursing home. Informal caregivers of persons who have had symptoms of dementia for a longer period of time (> 1 year) also experience limitations in their social network. Most persons with dementia receive some kind of professional support. Still, the majority of informal caregivers indicate a need for additional professional support, mainly concerning advice and information. Limiting the available support options for persons with initial symptoms of dementia and their informal caregivers is therefore undesirable. Considering the need for additional support in the initial stage of dementia as well as in subsequent stages, persons with dementia and their informal caregivers should be supported during the entire illness process.     

Circadian rhythm mediates the relationship between physical activity and quality of life in younger and older cancer survivors

Increasing evidence suggests that physical activity (PA) improves the quality of life (QoL) of cancer survivors. However, the biological mechanisms underlying the relationship between PA and QoL are unclear. The purpose of this study was to determine whether the relationship between PA and QoL differs in younger and older cancer survivors and whether circadian rhythm (CR) mediates this relationship. We also explored the effect of the CR on QoL. The participants were 235 cancer survivors, comprising 143 younger and 92 older patients. Data were collected using the Taiwanese versions of the Physical Activity Scale for the Elderly and Short Form-36. The robustness and stability of the CR were measured using an actigraph. Mediation was tested using multiple mediation analyses. The CR mediated the relationship between PA and the physical domain of QoL in younger and older cancer survivors (23% and 59% mediating effects, respectively). The CR partially mediated the effect of PA on the mental dimension of QoL in older cancer survivors (36% mediating effect), but not in younger cancer survivors. Cancer survivors with a more robust CR had a significantly higher QoL, particularly in the physical functioning domain (d?=?0.43, p?<?0.001). The results provided evidence that the CR mediated the relationship between PA and QoL. Moreover, this mediating effect differed in younger and older cancer survivors. These results can serve as a reference for designing individualized PA programs for cancer survivors.     

E-mental health interventies voor mantelzorgers van ouderen: een overzicht

E-mental health interventions for family caregivers of older adults: a review Purpose: To present a systematic overview of the different e-mental health interventions for caregivers of older adults. Methods: Systematic literature research of implemented and evaluated e-mental interventions for caregivers of older adults. Results: Thirteen e-mental health interventions are included: six telephone, one camera and six internet interventions. In general, research on user friendliness and client satisfaction shows positive results. The effectiveness of three e-mental health interventions have been studied. The family-based structural in-home intervention with the computer telephone integrated system shows a decrease in depressive symptoms after six and eighteen month. The telephone linked computer system did not show positive mental health effects for the total group of family caregivers. After online lessons, caregivers were more capable to organize respite care and to manage disruptive and challenging behaviours of the care recipient. Their ability to solve their own problems increased and their subjective burden decreased. A cost analysis of an internet intervention shows a reduction in costs in comparison to regular care. Conclusion: E-mental health interventions for caregivers of older adults are encouraging, although research in this field is still in its infancy. Research on the effectiveness and cost-effectiveness of these type of interventions is needed. In addition, the opportunities of internet interventions could be used more extensively. Tijdschr Gerontol Geriatr 2007; 38: 274-287     

Psychosocial group intervention to enhance self-management skills of people with dementia and their caregivers: study protocol for a randomized controlled trial

ABSTRACT: BACKGROUND: After diagnosis of a dementing illness patients and their spouses have many concerns related to the disease and their future. This often leads to poor psychological well-being and reduced health related quality of life (HRQoL) of the family. Support for self-management skills has been proven to be an effective method to improve prognosis of asthma, heart failure and osteoarthritis. However, self-management interventions have not been studied in dementia. Therefore, our aim was to examine in an objective-oriented group intervention the efficacy of self-management support program (SMP) on the HRQoL of dementia patients and their spousal caregivers as well as on the sense of competence and psychological well-being of care-givers. METHODS: During the years 2011-12, 160 dementia patients and their spouses will be recruited from memory clinics and randomized into two arms: 80 patients for group-based SMP sessions including topics selected by the participants, 80 patients will serve as controls in for usual community care. Sessions may include topics on dementia, community services, active lifestyle and prevention for cognitive decline, spousal relationship, future planning and emotional well-being. The patients and spouses will have their separate group sessions (10 participants/group) once a week for 8 weeks. Main outcome measures will be patients' HRQoL (15D) and spousal caregivers' HRQoL (RAND-36), and sense of competence (SCQ). Secondary measures will be caregivers' psychological well-being (GHQ-12) and coping resources, patients' depression, cognition and signs of frailty. Data concerning admissions to institutional care and the use and costs of health and social services will be collected during a two year follow-up. DISCUSSION: This is a "proof -of-concept" study to explore the efficacy of group support for self-management skills among dementia families. It will also provide data on cost-effectiveness of the intervention.     

Can Demographic and Exposure Characteristics Predict Levels of Social Support in Survivors from a Natural Disaster?

Objective

Lack of social support is a strong predictor for poor mental health after disasters. Psychosocial post-disaster interventions may benefit from targeting survivors at risk of low support, yet it is unknown whether demographic and disaster exposure characteristics are associated with social support. This study assessed if age, gender, educational status, cohabitation, and disaster exposure severity predicted aspects of informal social support in a cohort of Swedish survivors from the 2004 Southeast Asian tsunami.

Methods

The participants were 3,536 disaster survivors who responded to a mail survey 14 months after the disaster (49% response rate). Their perceptions of present emotional support, contact with others, tangible support, negative support and overall satisfaction with informal support were assessed with the Crisis Support Scale and analysed in five separate ordinal regressions.

Results

Demographic factors and exposure severity explained variation in social supports although the effect size and predictive efficiency were modest. Cohabitation and female gender were associated with both more positive and more negative support. Single-household men were at risk for low emotional support and younger women were more likely to perceive negative support. Higher education was associated with more positive support, whereas no clear pattern was found regarding age as a predictor. Disaster exposure severity was associated with more negative support and less overall support satisfaction.

Conclusions

After a disaster that entailed little disruptions to the community the associations between demographic characteristics and social support concur with findings in the general population. The findings suggest that psychosocial disaster interventions may benefit from targeting specific groups of survivors.     

Studying informal care during the pandemic: mental health,gender and job status

Unexpected negative health shocks such as COVID-19 put pressure on households to provide more care to relatives and friends. This study uses data from the UK Household Longitudinal Study to investigate the impact of informal caregiving on mental health during the COVID-19 pandemic. Using a difference-in-differences analysis, we find that individuals who started providing care after the pandemic began reported more mental health issues than those who never provided care. Additionally, the gender gap in mental health widened during the pandemic, with women more likely to report mental health issues. We also find that those who began providing care during the pandemic reduced their work hours compared to those who never provided care. Our results suggest that the COVID-19 pandemic has had a negative impact on the mental health of informal caregivers, particularly for women.     

Comparing the Health State Preferences of Older Persons,Informal Caregivers and Healthcare Professionals: A Vignette Study

Background

The Older Persons and Informal Caregivers Survey—Minimum Dataset (TOPICS-MDS) collects uniform information from research projects funded under the Dutch National Care for the Elderly Programme. To compare the effectiveness of these projects a preference-weighted outcome measure that combined multidimensional TOPICS-MDS outcomes into a composite endpoint (TOPICS-CEP) was developed based on the health state preferences of older persons and informal caregivers.

Objectives

To derive preference weights for TOPICS-CEP’s components based on health state preferences of healthcare professionals and to investigate whether these weights differ between disciplines and differ from those of older persons and informal caregivers.

Materials and Methods

Vignette studies were conducted. Participants assessed the general wellbeing of older persons described in vignettes on a scale (0-10). Mixed linear analyses were used to obtain and compare the preference weights of the eight TOPICS-CEP components: morbidities, functional limitations, emotional wellbeing, pain experience, cognitive problems, social functioning, self-perceived health, and self-perceived quality of life (QOL).

Results

Overall, 330 healthcare professionals, 124 older persons and 76 informal caregivers participated. The preference weights were not significantly different between disciplines. However, the professionals’ preference weights differed significantly from those of older persons and informal caregivers. Morbidities and functional limitations were given more weight by older persons and informal caregivers than by healthcare professionals [difference between preference weights: 0.12 and 0.07] while the opposite was true for pain experience, social functioning, and self-perceived QOL [difference between preference weights: 0.13, 0.15 and 0.26].

Conclusion

It is important to recognize the discrepancies between the health state preferences of various stakeholders to (1) correctly interpret results when studying the effectiveness of interventions in elderly care and (2) establish appropriate healthcare policies. Furthermore, we should strive to include older persons in our decision making process through a shared decision making approach.     

Multimodal home care intervention for dependent older people “Live better at home”: Protocol of a randomized clinical trial

BackgroundThe intensity of the home care interventions for dependent older people offered in Spain may not be sufficient to help keep older people living at home, being the institutionalization in a nursing home (NH) an unavoidable consequence.ObjectiveTo evaluate the effect of intensification in home care interventions on users with grade II or III dependency, as well as training for their informal caregivers in order to delay or avoid their institutionalization in a NH.MethodsA randomized clinical trial with two parallel arms and blinded assessment will be conducted at the community level in two municipalities in Catalonia (Spain). The study will include those older people (aged 65 and over) living in the community, with degree II or III of dependency, users of the public home care unwilling to be institutionalized and with a main informal caregiver in charge, who will also participate in the study. The assessments will be performed monthly up to 15 months, when the intervention will be finished. The main outcome will be the time until the willingness for admission to a NH. Secondary variables will be composed of sociodemographic, health, psychosocial, resource use, and follow-up variables. A multivariate Cox regression model will be carried out to estimate the effectiveness of the intervention.DiscussionA multimodal home care intervention could improve the health and psychosocial status of dependent people and their informal caregivers and facilitate their permanence at home.Trial registrationNCT05567965     

Health Behaviors of Breast Cancer Survivors with Hypertension: A Propensity Analysis of KNHANES III-V (2005-2012)

ObjectiveThis study examines health behaviors of breast cancer survivors with hypertension and compares them with those of non-cancer individuals with hypertension.MethodsIn this cross-sectional study, a total of 10,996 hypertensive adults (≥ 19 years) who participated in the 2005-2012 Korean National Health and Nutrition Examination Survey (KNHANES) were considered. Data on alcohol consumption, smoking, physical activity, antihypertensive medication adherence, self-reported diet control, and sodium intake were collected through self-report questionnaire. A total of 64 breast cancer survivors with hypertension and 10,932 non-cancer participants with hypertension were identified. To better compare health behaviors of the two groups, 56 breast cancer survivors and 280 non-cancer participants were selected through the 1:5 nearest available matching based on estimated propensity scores. Multivariate analysis was conducted to determine any differences between the two groups.ResultsAccording to multivariate analysis, breast cancer survivors with hypertension (n = 56) were significantly less likely to consume alcohol (odds ratio (OR): 3.75; 95% confidence interval (CI): 1.06-13.29) but significantly more likely to have sodium intake of more than 2400 mg (OR: 2.98; 95% CI: 1.27-6.97) than the propensity-matched control group (n = 280). There was no significant difference in other health behaviors between the two groups.ConclusionsBreast cancer survivors require active interventions for healthy behaviors related to the management of comorbid conditions such as hypertension to reduce the risk of cardiovascular disease and improve their overall survival rate.     

The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative

Introduction

In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons’ health care were to be conducted under this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu).

Materials and Methods

A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden).

Results

Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies.

Discussion

TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis.     

Schools for health: Focus on health, education and the school-age child

Mortality in children under five years old has been dramatically reduced through successful programmes of immunization and control of diarrhoeal diseases. UNICEF estimates that some 90% of children in developing regions now survive to reach school age. These survivors face new and continuing threats to their health, which can affect their physical development and may also prevent them taking full advantage of their only opportunity for formal education. The physical and mental growth of the 1000 million school-age children today will influence how the world is shaped for coming generations. Yet the health problems of this age group have received little attention. Recognizing the importance of this age group, a workshop funded by the Edna McConnell Clark Foundation was held 10-13 November 1994 in Fort Mitchell, Kentucky, USA, to review what is known about the health of school-age children, what is or can be done to improve their health, and what steps must be taken to find ways to improve the health and educational achievement of this important segment of the world's population. Don Bundy and Helen Guyatt here report on the workshop, which had three major conclusions: (1) the school-age children of developing countries face health problems that remain neglected and poorly understood; (2) an important research need is to develop simpler means of monitoring the health status of school-age children and evaluating the impact of public health interventions in this age group; and (3) two strategies are available to address this public health problem. The first is to develop further and test programmes that appear, from available evidence and pilot studies, to offer effective means of improving the health of this age group at reasonable cost, and to be sustainable; and the second is, over a longer term, to develop the capacity within countries to assess the health problems of school-age children and devise cost-effective strategies to address these problems. This report attempts, in brief form, to survey what is known about the health status of school-age children, to discuss the possible benefits to health and learning that accrue from health interventions, and to suggest some avenues currently available for both research and application.     

Symposium De toekomst van de informele zorg

Due to the reform of long term care in 2015, there is growing concern about whether groups at risk receive the care they need. People in need of care have to rely more on help from their social network. The increased need for informal care requires resilience and organizational skills of families, but also of volunteers, professionals and employers. What does this mean for the provision of informal care in the next decennia? The symposium ‘The future of informal care’, organized on January 26 2017 by the National Institute for Social Research and the Institute for Societal Resilience of the Vrije Universiteit, addressed possible answers to this question. In her inaugural speech Alice de Boer discussed social inequality as possible determinant and outcome of informal care. Some conclusions:Until 2050 the absolute number of 75-plus doubled to about 3 million persons, but the number of informal caregivers will decrease. In addition to the importance of social and economic resources (the ‘have & have-nots’), the ability to arrange care (the ‘can & can-nots’) gains importance.Almost half of the older employers provides informal care just before retirement. Flexibility in working hours and work location facilitates combining work and care, but about half of the employers indicates that partial retirement and working at home are no options.Informal caregivers and professionals often provide care from comparable perspectives and identities. Addressing similarities rather than differences improves their chances for collaboration.The number of adult children providing household care to older parents increased between 2002 and 2014. This suggests an increase in family solidarity, but current reform policies may increase the gender inequality in caregiving families.Spouses and children remain primary caregivers in the future, preferably supported by many different types of caregivers. Not everybody has the capabilities to organize and direct such a large care network.Providing informal care increases the risk for overburden and absence at work or education. Informal caregivers at risk remain, also in the future, women, spouses, migrants, and younger carers.     

A Survey of Canine Heartworm Awareness in Grenada,West Indies

Heartworm is a common parasite of dogs in Grenada, West Indies, due to the tropical climate and large number of mosquitoes. Because Grenada is a developing country and a small island, resources and education on heartworm are limited. In an effort to raise awareness of canine heartworm and the preventive measures available, observations and surveys were performed to determine the following: (a) heartworm knowledge among Grenadian dog caregivers seeking veterinary care at the Grenada Society for the Prevention of Cruelty to Animals (GSPCA), (b) dissemination of heartworm information by GSPCA staff to Grenadian dog caregivers, and (c) reasons Grenadians are not administering heartworm prevention to their dogs. Results indicated a marked deficiency in both heartworm knowledge among Grenadian dog caregivers and heartworm knowledge acquisition and dissemination. Lack of knowledge was also cited as a major reason Grenadian dog caregivers were not using heartworm prevention. These results are currently being utilized to modify heartworm education practices at the GSPCA by incorporating Grenada-specific educational tools, with the ultimate goal of reducing illness and death by canine heartworm.     

Does being a retired or employed caregiver affect the association between behaviours in Alzheimer’s disease and caregivers’ health-related quality-of-life?

Objective

We examined whether caregivers’ employment status (i.e., retired or employed) might modify the association between the behaviours of persons with Alzheimer’s disease (PwAD) and caregivers’ health-related quality-of-life (HRQoL). Data came from a cross-sectional study of the primary informal caregivers of 200 persons with mild or moderate Alzheimer’s disease. Caregivers completed the EQ-5D-3L to rate their HRQoL and generate health utility scores, and the Dementia Behaviour Disturbance Scale (DBDS) to assess the degree to which PwAD exhibited each of 28 behaviours. Caregivers’ health utility scores were regressed on overall DBDS scores, with caregiver employment status (retired, employed) treated as an effect modifier and confounder in separate regression models. We also controlled for age, sex, income, education, caregivers’ relationship to the PwAD, and whether caregivers gave up paid employment/cut down working hours to care for PwAD.

Results

Effect modification by caregiver employment status is possible, with the inverse association between DBDS score and health utility score largely existing for retired versus employed caregivers. Research using larger samples and longitudinal data would further inform this area of inquiry.

     

Parental quality of life in the framework of paediatric chronic gastrointestinal disease

Chronic gastrointestinal diseases, such as inflammatory bowel disease (IBD) and celiac disease (CD), might have impact not only on the affected child but also on their parents since inside the family framework, a change in each member may have influence on the whole system. The aim of this study was to test the hypothesis that parents whose children have IBD or CD will have a lower quality of life (QoL) compared to parents of healthy children, as well as that lower QoL will be found among parents who perceive lower health related quality of life (HRQOL) of their child. 55 parents of children with IBD, 49 of CD and 53 parents of healthy children were included in the study. Children were aged 7-18 years. In order to measure parental QoL, a Croatian version of the WHOQOL-BREF questionnaire was administered, with four domains: physical health, psychological health, social relationship and environment. The Total QoL was calculated as a sum of all domain items. The parent-proxy report of children's HRQOL, PedsQL 4.0 Generic Core Scales was used. Main result shows that parents of children with IBD report a significantly lower psychological health, compared to parents of other children, and significantly lower physical health compared to parents of healthy children. Among parents of children with CD and parents of healthy children, better parental Total QoL was significantly correlated with better parental report of children's HRQOL, while for parents of children with IBD those associations were not found. Results of study show association between presence of the disease in offspring with poorer parental QoL, thus highlight the importance of supporting not only children with chronic disease but also involving their parents in psychosocial interventions, as well as supporting the patient's association groups which gather both children with chronic disease and their parents.     

Challenges and Opportunities in Radiation-induced Hemorrhagic Cystitis

As diagnosis and treatment of cancer is improving, medical and social issues related to cancer survivorship are becoming more prevalent. Hemorrhagic cystitis (HC), a rare but serious disease that may affect patients after pelvic radiation or systemic chemotherapy, has significant unmet medical needs. Although no definitive treatment is currently available, various interventions are employed for HC. Effects of nonsurgical treatments for HC are of modest success and studies aiming to control radiation-induced bladder symptoms are lacking. In this review, we present current and advanced therapeutic strategies for HC to help cancer survivors deal with long-term urologic health issues.